I’m sorry for my absence. I’ve been contemplating writing this for a while now. But i’ve been holding back.
The reason for this is that i’ve begun overcomplicating things in my own mind.

I started this blog to share with you the rollercoaster ride that seems to be my life. I wanted to share everything from the highs to the lows hopefully attempting to show that although having a disability sucks sometimes, there’s a lot in life for us all to be grateful for, and in my case, find the funny side of it all.

As more time went on I realised I didn’t just want to share my story but share other people’s stories too.
I wanted to be a platform for people to learn something new, become more open minded and even to be a resource to for those who may be seeking it.

I have a thirst for knowledge and a passion to educate and support others.I put my energy into creating content that I hoped would be of use to others, and put my own thoughts and stories on the back burner, until I thought they would be of use.
I’m open and honest on this blog and fingers crossed it’s somewhat entertaining…

But i’ve been overcomplicating things… I wanted my blog to be a resource, a platform, a network and a home to share it all.
I started my campaigns in the hopes of creating a community. I wanted to be inclusive of everyone; fromAutism to arthritis or cystic fibrosis to depression, right through to those that care for people with a disability.

My #DisabilityQ&A took off, and I was excited to be sharing peoples’ stories, and i’m extremely grateful for those of you who got involved!

I tried my best to create the same enthusiasm with my other campaigns, as well as trying to encourage those with any #Disability to get on board with no avail.
I was disheartened somewhat but I had a million and one other ideas for blog posts that I thought would be interesting and useful. So I kept going.

Blogging not only became my passion, but it became an obsession. If I wasn’t writing content I was thinking of what material to use and researched it to make sure my facts were correct.
I joined in fabulous linkys, I had a tribe and I spent all my spare time talking to bloggers, reading their awesome blogs and promoting as much as I could.

I was having the best time, I was making new friends around the globe, learning new things and achieving what I hoped with my little corner of the internet.

But then I began to overcomplicate everything.

I was in a tribe that were all on a similar level to each other, constantly supporting one another and giving continuous encouragement and praise.
It was fantastic, I couldn’t have asked for a more supportive and kind bunch of people to be around.

But the further I delved into the blogging world the more I realised how technical things got.
I was knee deep in blog posts or conversations that revolved around stats, branding and monitisation.

I became interested in raising my stats; the prospect of working with brands who could help further my campaigns, give my blog exposure and in turn become the platform I hoped it could be.I thought I could really make a difference; doing reviews, giving talks and getting more people to share their trials and triumphs.

I was eager and excited at the prospect of doing something good: exposing other campaigners and my little blog being recognised for creating a community of support and resources.

So I joined blogging groups, blogging platforms that would connect brands with bloggers and even emailed PR’s and organisations to introduce myself and explained my ambitions for the blog.

And that’s where things became complicated.

I quickly realised that I was too niche for brands, PR’s and even organisations to want to work with me.
Review opportunities came in the form of fashion, kids accessories, beauty or luxury jewellery.
These reviews were not quite what I was looking for, and the odd time I thought I could work with a brand to review things from a disability standpoint I was stopped at the first hurdle.
“5000 followers minimum to apply”

I appreciate each and every follower and reader of my blog.I want people to follow me because they have a genuine interest in my blog and my campaigns.
I’m not a parent blogger, fashion or beauty blogger.
Although I have interest in fashion and beauty i’m not going to pretend I follow the latest trends… I have little to no knowledge of these things to even warrant blogging about them.

I was also getting nowhere with contacting PR’s/ organisations via email. The few times I was lucky to get a response I was congratulated for what I was trying to achieve but ultimately they did not have the time or budget to work with me.

At this point I was surrounded by fabulous bloggers acing it with stats, brand work and even getting paid work! I couldn’t be happier for my friends,but I found it increasingly overwhelming and at points unworthy to be in their company.

I wasn’t achieving what they were.

Even the bloggers I was reaching out to for my campaigns seemed no longer interested in joining them.

I became deflated and even at times frustrated… I was trying to make my blog into a place that was more about the community than it was about me.

Even though I had blog post ideas zooming around my mind and cluttering up my drafts; I started posting less and focused more on promoting the blogs myself and others had already taken the time to write.
After a while I slowed down on the amount of linkys I joined too.
I began to notice that unless I was one of the first people to link up, my posts I pretty much got ignored.
I used to spend hours reading and commenting on blogs and even sharing them over my social media, but the less often I shared or commented I began realising that people clearly weren’t interested in my blog.
It had become a: you scratch my back, i’ll scratch yours mentality…

Aside from the few people that genuinely enjoyed reading my blog, left me meaningful comments or shared my posts my stats dropped faster than an avalanche.

At this point I was done with spreading the blog love. I put 100% effort into my posts, and I wanted nothing more than to educate people who had little to no knowledge of disabilities and be a place for those with disabilities to find support and even new ideas.

By the time I had been in hospital for a week: after breaking my leg I wasn’t even sure if I should blog about it.
I’d become so wrapped up in wanting to be a space to share knowledge, ideas and experiences I thought people wouldn’t be interested in hearing my holiday dramas.

I began my blog to share my story, yet in my mind I feel it’s become something bigger than that.
I guess that it’s because I wonder often, what makes me so special that I should spend day after day talking about myself.
What is it that makes me more interesting than any other blind or disabled person out there?

And the answer is, there isn’t.

I’m just another blind person talking about their disability.

But it’s my space.

If my little corner of the internet can educate one person or give another disabled person a someone to relate to then i’ve done my job.

Stats, brands and opportunities are great, but this is no longer my focus.
Of course if a worthwhile opportunity were to come knocking, I would grab it with both hands.
But most importantly i’m grateful for my lot, and anything else is a bonus.

I’m definitely no beauty expert but I believe that any girl that wants to get into a good beauty regime should have these in their arsenal.
I feel it’s important to share this with you as it is going to be a good base for my next few posts 🙂
If you are visually impaired or blind and want to start experimenting with make up I hope these posts will be of use to you!

Before we begin, always make sure that you exfoliate and cleanse your face before applying any products.

🙂

Moisturiser

It’s important that everyone uses moisturiser, it keeps your skin soft, supple and hydrated.
Find a moisturiser that works with your skin type; normal, dry, sensitive, oily or combination.
Doing this Not only is good for the skin, but because moisturiser is the base for anything else beauty-wise going on your face.

Vaseline

Not only is vaseline great for keeping your lips moisturised, but it also has many other uses as a beauty product.
Which I will go into further in another post. 🙂

Make up brushes

There are several make up brush brands out there, and each make up brush has a different purpose.
Although, it’s not necessary for you to get lots of make up brushes if you are just starting out. But it is important to invest in 1 or 2 good quality brushes that can assist you with make up practice.
I will be creating a separate post of the different types of make up brushes and their specific uses.

Eyelash curlers

Eyelash curlers are a big must! in the make up world; Whether you have short or long lashes, using them will open your eyes up and make them look bigger and brighter

Eyebrow brush

This is another big love in the beauty industry. They are great for tidying your brows as well as shaping them before applying brow liner or mascara.
Eyebrow brushes are also great for separating eyelashes. It does this by individualising your lashes before applying mascara, and handy for running through the lashes after application to remove any clumping of the eyelashes.

EyePencil sharpener

An absolute must if you are going to be applying eye, brow or lip pencil.
They are so cheap, having 2 or 3 in your arsenal is very worthwhile.
It means you can have 1 for your make up collection. 1 for your travel bag and a spare encase either goes missing!
Tweezers
Perfect for when you want to get rid of that stray eyebrow hair, but also extremely useful for doing delicate things like applying false nails or eyelashes.

Cotton buds
There are so many brilliant uses for cotton buds:adjusting make up, correcting make up faux-pas, and brilliant for creating your own travel eyeshadows, or travel lipsticks.
You can also use them as emergency applicators. Or to create more definition.

Cotton pads

Great for removing make up nail polish and applying cream.
If you are travelling put a cotton pad on top of your powdered make up, it stops your foundation/ blusher/ bronzers cracking when luggage is being thrown around.
Make up wipes

Pretty self explanatory; used mostly for make up remover. You can also use wipes for cleaning make up bottles/ products.

Nail file

As of yet I haven’t found any other purpose for the nail file.
Keeping your nails at similar lengths is good for nail strength.
Only ever file in one direction, otherwise it damages the nails.

Nail strengthener

Sometimes your nails can become a bit brittle, especially in the Winter.
Using nail strengthener now and again will help improve the durability and length of your nails, especially in those colder months.

Nail polish remover

If you’re the type of person that wants to wear coloured nail polish, then nail polish remover is a must!
Removing nail polish before it starts chipping will not only help keep the nails in a healthier condition. Having chipped nails makes you look tacky.
Nail polish can become a bit sticky,, adding a drop or 2 to the polish will return it back to it’s original liquid consistency.
Keeping your nail polishes refrigerated will ensure longevity.

These beauty essentials can be bought at any drugstore. I would recommend doing your own research for your skin type. Buying a moisturiser that will work with you and your skin tone is important for any beauty regime.
Even though I am going to produce a post on make up brushes it is worthwhile shopping around to find the brushes that match your taste and budget.
Online stores, blogs, YouTube, magazines, reviews speaking with family and friends or going to a make up counter and asking to test the brushes yourself is always useful.
Remember, what may work for one, person may not work for others,

For those of you who are very new to make up, I am going to list drugstore products I use.. Showing You that you can still have quality products that makes you look and feel good, but you don’t have to break the bank to do it.

I am extremely fair skinned so all the products I am going to share with you are for my specific skin tone.

How do you find out your skin tone?

In places such as Boots you can have your skin tone matched for you by a specialist machine. The machine looks slightly like a handheld barcode scanner and is placed gently on your face. This will give a reading and the lady behind the counter can help you pick out make up that will match your skin tone.

Alternatively you can take someone you trust along with you and they can help you.

TIP:
Testing your foundation should always be applied on your jawline. If it blends in then you have the correct shade for your skin tone.

Today’s interview is brought to you by Holly, she has quite a social media presence and is a fantastic advocate for people with disabilities, especially visual impairment. I got in touch with her via Twitter and asked if she would like to join and she agreed 🙂

Over to you Holly;

Tell me about yourself:
Hi, I’m Holly
22
and I live in Coventry for university, but York is my home.
What is your job?
I am a student, studying Spanish at Coventry University.

If you could extinguish your disability, would you? – If not, please
explain why.

I don’t really have a clear answer for this. I am really comfortable with
who I am, and am not sure that, if given the choice, I’d want to see. When
people go blind they require a huge amount of rehabilitation and I believe
the same would be true if I regained my vision, especially as I’ve been
blind since birth.

My blindness is part of my identity, it has shaped my choices and
experiences and I’m not sure what my life would be without it at this
point.

For those who do not know much about your VI what can you see?

I have light perception only.

How has your disability effected you?
*Socially

I think that socially there are two sides to it. On the one hand, people
feel quite uncomfortable when faced with disability and this can certainly
affect the way they behave around me. On the other hand I have met many
people through travel and attending events that I would never have come
across otherwise. In many ways I believe that blindness has given me the
opportunity to expand my world view.

*physically

Although my eye condition doesn’t affect me physically I do have joint
problems, most prominently my hips, that cause me pain. I am still able to
do almost everything, though found I wasn’t physically able to participate
fully once I joined my university’s ice skating society this year.

*Mentally

I get very tired sometimes, I suspect from sensory overload which can be
quite disruptive, but in general I am absolutely fine 🙂

Do you think your disability has made you who you are today?

I think I have had experiences that I wouldn’t have otherwise, for example
making friends with people in many different countries. This has lead me
to travel which is an amazing thing to do, and I’m glad I’m doing it now
I’m a student and have the time!

Is there a particular question you get asked often because of your
disability?

I often get asked why I’m blind/what’s wrong with me. Unless the person
has a reason for asking, for example they have become friends with me, or
they are doing so for medical purposes I usually decline to answer. I feel
like there are many more interesting things about me, and strangers should
get to know me first, rather than fixating on my disability.

What are the positives of having a disability?

Shared lived experiences with a diverse community, opportunities for
travel, creativity to find a work-around for inaccessible situations.

What are the negatives of having a disability?

You often have to work harder to access things which can be tiring and
frustrating.

What would you say is a difficulty for you being VI / disabled?

The most difficult thing for me is constantly challenging peoples
expectations of blindness. Sometimes I just want to go somewhere and not
have to educate, but at the same time I believe that education is really
powerful.

As a person with a disability, what are the things you face on a daily /
weekly
basis that frustrate you?
*outside your home

I don’t really like to be touched, especially by strangers and it
frustrates me that people will often grab me without asking. I am always
grateful to receive an offer of help, as I have the choice to accept or
decline. However when that choice is taken away from me I feel very
uncomfortable.

Are there any tips or tricks you use in daily life you’d like to pass on
to another
VI/ disabled person?
*Colour coordinating your clothes

I learnt what colours match and I pair my clothes using that knowledge.

*Applying make up?

I apply all my own makeup, and have made a video tutorial explaining how i
do this. I’m planning on making more in the future as I realise it’s an
area where we are lacking in information.

Do you use Assisstive technology in your daily living?

Yes, I use Blindsquare: this is a GPS app designed for the blind.
I also use TapTapSee: A photo app that briefly describes images that you have taken whilst in the app itself.

What piece of advice would you give to someone newly diagnosed? Or going
through a
deterioration in vision / or mobility?

Gain as many non visual skills as you can. People think when they lose
their sight that they will become helpless, but this doesn’t have to be
the case. As a blind person you can live a completely full, independent
life. But it takes time and effort. Seek out your local sensory support
service and request to receive services from them. If you know you are
going blind then practise skills under blindfold. It might be scary at
first but you’ll know you are prepared, rather than feeling like you’ve
fallen in at the deep end once you lose your vision.

Surround yourself with positive blind role models. Ask them how they cook,
or clean, or use their computers. There are no stupid questions. Challenge
your preconceptions of blindness, there are so many things you can do as a
blind person.

Any advice you’d like to give to a person with sight / no disabilities?

Never assume that a blind person can’t do something, just because they are
blind. Maybe it takes longer for them to find a specific doorway, or they
go about it a different way, but the way we navigate, or cook, or raise
children is just as valid. Always ask before jumping in to help, and be
willing to learn something new 🙂

Did you seek out any specialist services / charities to help you and your
family
deal with your situation?

Not really, but as a young adult I have attended activities ran by VICTA a number of times.

“Sleep is for the weak!” I screamed as the hospital ward lights flickered on.

OK i’m joking. I was extremely tired and the combination of excruciating pain, and the constant need for the bathroom didn’t allow me any quality of sleep.

I was fed, washed and dressed waiting for the Doctor to arrive. He came over and asked all the usual Doctor questions. I explained my blood pressure cuff analogy to him and said that the pain had worsened the longer I had the cast on.
He was very friendly and supportive, even saying he would take my cast off to examine my leg. But as he did not perform the surgery, and wasn’t my Doctor, he had to wait to speak to a Consultant to see what to do.

Not too long after, my nurse came over and said he’d heard I had been uncomfortable all night, and I was complaining about the pain in my leg; to which I agreed.

“It sounds to me like your cast is too tight, let me go get some scissors and i’ll cut it off for you.”

The relief was evident on my now smiling face!

It took Rich, my nurse, a while, but he managed to cut the cast all the way down to the top of my ankle.
The relief was almost instant, my leg was on fire and heavily pulsing, but I actually managed to feel the blood pumping around my leg.

After a serious dose of medication and about half an hour later, I could feel my leg again, and not just agonising pain!

The Doctor came back not too long after and asked how the pain was, he was surprised to hear how drastically my pain scale had reduced.

“My ankle still feels really tight and sore, but it’s like my leg is able to breathe again.”

Rich, my nurse, was with me at this point and the Doctor said there and then to cut the cast off completely, the cast was obviously too tight and I should be fitted with a brace and not another cast.

You would have thought i’d just won the lottery with that comment, I was so ecstatic and relieved at the same time!

Again, as he was cutting the cast off my foot, I could feel the blood beginning to move freely around.

My entire leg was massively swollen, but the tight pain had almost fully disappeared!

Unfortunately it seemed like the surgeon, Doctors and nurses had not taken into consideration my Arthritis.
Whenever I have had a knock or bump to my body in the past, my Arthritis tends to balloon. So the combination of my accident and surgery on my leg, my joints were bound to become inflamed; specifically my knee and ankle.

And that was exactly what happened…

My leg had doubled in size… Couple that with an extremely tight cast and you’ve got a lot of pain through lack of circulation.

I trust Doctors, after all they are the one’s who went to medical school, but i’m an advocate for no-one knows your body better than you do. I’ve lived with chronic pain since the age of 7, so I know the difference between normal pain, and abnormal pain.
*****

With each day that came and went my leg pain decreased, I owe a special thanks to my friend Oramorph for helping me with my pain relief!

Those first few days on Oramorph were certainly interesting, I was a little woozy, mostly sleepy and my brain felt like it was trudging through sludge… it even got to the point that I declared to the occupational therapist that if nothing was going to happen over the weekend then I was just going to go home and come back Monday – until my friend kindly pointed out that this was a hospital and they weren’t just going to look after my bed for me for the weekend until I decided to return!
When my brain and tongue finally engaged, I realised how ridiculous I sounded, and we had a good laugh at my expense! ;)*****

On a more serious note I did realise just how understaffed, overworked and underpaid the Nurses and Health Care Assistants actually are.

Some patients needed more support due to their age, physical restrictions and sometimes a combination of the two. It was eye opening to watch just how demanding some patients can be, and how in turn that has a domino effect on the rest of the ward and staff.
I also noticed the lack of financial funds that the NHS have on the ground and how that is impacting on patient care.
One particular lady was brought in because she had a fall and had broken her foot… She was also very elderly and suffered with Alzheimer’s

It was heartbreaking to watch her in such distress asking where she was, what had happened, where her parents were as they would be getting worried about her and the why couldn’t she go home?
When she first arrived she had one on one support from a nurse, but that didn’t last very long as the nurse had other patients and duties to attend.
It was awful to bare witness to her on a continuous loop, that turned into hysteria when nurses couldn’t be present to talk to her and soothe her.

When the nurses weren’t around I tried to engage her in conversation as best I could, going through the motions of answering her questions. At some points she and I had conversations about her life and the odd time she was even lucid for a few minutes, so it was lovely.

However being witness to this happening over a few days on one ward I am saddened that there not are specific wards for such patients who need that extra care, support and attention.
Unfortunately this wasn’t the only patient I saw this happening with. I moved wards on Saturday around midnight and there was a similar case with another elderly lady.
Thankfully this ward was much smaller and quieter so nurses and HCA’s could give more attention to her. However, other patients such as my neighbour and myself were forgotten on several occasions.
I blame the Government for these situations, not the Doctor’s,Nurses and HCA’s on the ground. But it’s plain to see that even being in a first world country, patients still aren’t getting the full care and attention they truly need.

*****

I’m grateful to both hospitals for the care and treatment I received because without them I wouldn’t be at home recovering, trying to live a normal a life as possible as a one legged, blind short arse can 🙂

It’s not been plain sailing; lack of medication, supportive equipment, medical appointments and staples being in my leg 3 weeks longer than they should have been haven’t made my recovery easy but it’s been just over a month since my operation, so i’ve only got 8 weeks left to go!! 🙂
****
It was lovely to bump into you Becca, and meet you Eileen, i’m just sorry it was in such crappy circumstances!
I hope your recovery is going well and you’re kicking butt 😉

Hello ladies and gents, thank you for returning to another interview in my #DisabilityQ&A series! 🙂

Today I am featuring an interesting lady by the name of Mandy, I’ve seen her on social media, and I thought her to be an interesting person. She got in touch with me asking to participate, and of course I said yes! She really does have a fascinating blog, so after this interview, you should really go check it out 🙂

Enough rambling from me, I shall hand the reigns over…
Tell me about yourself:
Hi I’m Mandy Ree, I’m 30
and I live in Orlando FL. I am a freelance writer and blogger for my own personal blog Legally Blind Bagged, looking for employment in the meantime.

What hobbies do you have? I’m an avid toy collector and comic con enthusiast, Disney and 80’s kids culture is my specialty. I am also working on writing my own book “Lessons From A Power Ranger” which chronicles my journey of finding my voice in self advocacy with the help of my boyfriend with cerebral palsy.

Now we know the basics, can we learn a bit more about you?

What is the medical reason you have a disability?
I was born with Austimal Recessive Ocular Albinism, a rare condition that mirrors the visual impairments of a person with Albisim but without the other physical characteristics. Hence I’m very sensitive to light and am considered legally blind, but I don’t have the white hair or the fair skin. In addition, I also suffer from PTSD and Anxiety as a result of severe bullying growing up.

Which terminology do you prefer ? Legally Blind

Do you have a cane, Guide Dog or neither? I have a cane I only bring with me when I’m unfamiliar or semi dangerous, non pedestrian friendly places.

If you could extinguish your disability, would you? – I have always wished from the time I was little up until now there was a cure for my disability. What I wouldn’t give to be able to drive. The buses in Florida are horrendous.

For those who do not know much about your VI what can you see? The best way I can explain my vision to others is as if you took a bunch of crappy pixelated camera phone pictures from 2005 and surrounded me with them. I can see people and things around me, but can’t make out details, resulting in face blindness. Which explains my awkwardness in social situations.

How has your disability effected you?
Mentally, I’m drained. Having a physical disability makes me question my worth in this world. It seems like things that should come easy like getting a job or traveling take twice as long for me to accomplish, despite having the intelligence and work ethic to do so. Thankfully I have a lot of good friends from my most recent job experience at Disney and the comic con circuit who have taken me under their wing and have come to my aid on multiple occasions. I’m not alone like I was as a kid growing up in school, so I consider myself blessed.

Do you think your disability has made you who you are today?
I have become more open minded of other people and their needs. Ever since I was a kid who was mostly in mainstream classes, I was always curous as to what goes on behind the closed doors of “that other classroom” (Special Education). In my teen years, I started to volunteer my time in the Special Education classrooms, helping to bridge the gap between them and the rest of the student body before inclusion of those with developmental disabilities was a thing. I learned a sense of empathy and understanding towards others and grew a passion to help pass those values on to other people.

Is there a particular question you get asked often because of your disability? How many fingers am I holding up? Believe me, that shit gets old real quick.

What are the positives of having a disability?
Learning that there are perks in traveling. Florida has a special identification card program that gets paired with a reduced fare bus pass, which grants me a free lifetime bus pass. I also recently learned the perks of navigating the airport by admitting my disability, like being able to get in the handicapped line at the TSA check in and priority boarding on the plane. The only perk I don’t take advantage of is the attendants with the wheelchairs that take you to the gate, I would rather have those saved for someone who needs it.

What are the negatives of having a disability? The sense of independence. My parents are extremely overprotective sometines and I often feel like I can’t prove I can do things on my own without help. Not being able to drive is also tough considering that free bus system I use takes a ridiculous amount of time to get from one point to another. When I worked for Disney, it took me 3 hours to get home as opposed to 15 minutes down the highway. Thank God for Uber.

What would you say is a difficulty for you being VI / disabled? Oddly enough I am in the gray area between disabled and non disabled, making it hard to receive services like staff to help me travel and do some hard tasks, like sewing or filling out paperwork in small print. I’m classified as too high functioning to get help and it took me forever to get on Disabilty and Medicaid. Speaking of Medicaid, getting to utilize it is difficult, since not many doctors who take it are bus friendly for me to get to. Florida lacks greatly in services and I find it appalling. Being independent is hard, it’s even harder when your income is soley your disability check, as in the case for me since I lost my job two weeks ago. I honestly don’t know how people do it. I love I’m what’s called a Right To Work state so finding jobs are hard in a state where you can technically still be discriminated against.

As a person with a disability, what are the things you face on a daily / weekly basis that frustrate you?
*In your home- Minor tasks can be a challenge, like sewing or putting together furniture. I have been learning how to cook with my mom when she visits me during the summer, but cutting vegetables and measuring are still hard on me, resulting in food that resembles something out of Kitchen Nightmares
*outside your home Traveling by the bus system. Nuff said.

Are there any tips or tricks you use in daily life you’d like to pass on to another VI/ disabled person?
To help with finances, I use a white board to help me remember what bills I need to pay. I have a folder set up on my phone that has my bill paying websites bookmarked, since paying online is easier for me to do than paper. When going to new unfamiliar places, I put Google maps on and use that to let me know what stops I need to get off at. I rely heavily on that when I travel so I always leave portable battery chargers in my bag, just in case. I also tied a lanyard wallet to my purse that holds my bus pass so I can easily find it.

Do you use Assisstive technology in your daily living?
Google Maps with the speech on is a lifesaver. I also have a small digital magnifier that helps with small print reading.

What piece of advice would you give to someone newly diagnosed? Or going through a deterioration in vision / or mobility? It doesn’t hurt to admit you need help.

Any advice you’d like to give to a person with sight / no disabilities? Never give up on your dreams, no matter how outlandish they may be.

Did you seek out any specialist services / charities to help you and your family deal with your situation?
I received help from Floridia Department of Blind Services and have taken advantage of mobility classes upon first moving down here from Ligjhthouse of Central Florida. When I was in college up In Rhode Island, I learned to accept my disability and the basics of self advocacy from Advocates In Action Rhode Island, a great non profit that helps people (mostly with developmental disabilities) learn that they can lead a meaningful life and have a say in their care plans. I owe my life to them, for without them, you wouldn’t be reading this now.

Where can people find you out in the world?
*Blog – Legally Blind Bagged
Legallyblindbagged.wordpress.com

Anything you’d like to add my lovely?
On August 23rd at 4pn EST, I will be doing a live Q&A on the Mighty Facebook Page. I will also be speaking at the Advocates in Action Statewide Self Advocacy conference in Warwick RI October 27. More details will be shared on my Legally Blind Bagged Facebook page soon.

Thank you so much for participating Mandy, it was a very insightful read! I’m sorry to hear of the troubles you have faced due to your disability, and the lack of confidence that others have thurst upon you. It must be very disheartening! But good for you for powering through and proving how strong you are ! You are clearly very passionate about Disney and I hope your book goes well! Best wishes with it all, and keep in touch to let us know how it goes!

Please don’t forget to follow her links, and why not share the love? Leave her a comment, we would both appreciate it!

If you, or anyone you know, would like to take part in my Campaign, do not hesitate to contact me on the following:
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I had a call Tuesday morning to let me know that my surgery would be the next day, no eating or drinking anything after midnight, I needed to arrive by 07:00 and I would be told where on the list I was for my operation.

Gary and I managed to get lost; we rocked up to the reception desk to ask for directions, unfortunately the lady sent us off in the completely wrong direction and we ended up on the surgical ward… Through the use of a map and correct directions from the nurses we finally found the right building!

We were told that I was the first patient on the surgery list, woohoo! We filled out the last remaining paperwork, and I got dressed into my gown and stockings, I looked very fetching I must say!
I was wheeled into a waiting area and left their for about 5 minutes before the anaesthetist came to get me. Gary came in with me and we met Mr Khan, the surgeon doing my operation.
It was the first time since my accident that i fully knew what had happened: I had a displaced fracture of my Tibia and Fibula; they had crossed over each other, and my Patella had shattered and fragments were floating about in my knee.
Mr Khan would be putting in metal plates, screws, rods and wires along with artificial bone to reconstruct the knee. Without complications this would take around 3 hours.

He explained that this was a very serious fracture and a complex operation; I tried to crack a joke but he just stayed stoney faced, awkward turtle moment right there!
Mr Khan also stressed to me that because of the trauma to my leg I would now have OsteoArthritis in the knee for the rest of my life.
*Lucky me; now i’ll have 2 types of Arthritis! I don’t do things in halves do i?* 😉
The anaesthetist was very chirpy and friendly, we were cracking jokes while i asked him how long he’d been an anaesthetist?

Gary was very nervous and worried as this was the first time he has ever been to theatre before, I could tell, and tried to be enthusiastic and show I was relaxed.
I told him to give me a kiss and that I loved him, then I settled and said it’s fuzzy i’ll be asleep any second.

The anaesthetist was very kind, taking my oxygen mask off so Gary could kiss me one more time, at this point i’d already drifted off…

*****

I came round from the anaesthetic in the recovery suite, The room was big, bright, air-conditioned and I had a monitor strapped to me checking my OBs. There was the hum of the machines and the bubble of nurses chattering.
I started to wave my arm; being blind and having a dry throat it was the most logical way to get their attention. A second or so later, a nurse came across and asked how I was? There was a lot of head nodding and thumbs up, I was too woozy to talk.

And then the pain hit… *Wow this is really uncomfortable! But I guess this is normal?*
“Could I have some painkillers please?”
“Yes of course, what’s your pain-scale like, 1 being good and 10 being awful?”
“7,,71/2”

The more time passed, the more and more uncomfortable I became. It didn’t help that I was getting hot and sweaty and my nose was extremely itchy, I kept having to take my oxygen mask off, itch my nose and fiddle about with it to try and put it back over my face.Finally the nurse noticed the muddle I was getting myself in trying to put my mask back on and offer to put the line up my nose instead. The relief was almost instant, I started to cool down and my nose was less itchy!

I kept asking for more and more painkillers, each time my ranking rating higher than the last time.“The pain really should be subsiding by now, where is the pain?”
“My leg.” “It’s like I can’t feel the circulation, my leg feels like it has 3 blood pressure cuffs on it at the same time.”
“It is normal to have leg pain after surgery, and they do tend to wrap it quite tight to stop swelling.”
“But this doesn’t feel normal.”
“Wiggle your toes for me,can you feel me touching your foot?”
“Yes.
“You’ve got full circulation, your leg should settle down soon, i’ll give you a little bit more morphine before we take you upstairs.”
“Yes please.””Can you call Gary please?”
*I need a wee, i’ll just think of that instead of the pain…*

***

“OK Sassy we’re ready to take you to the ward now.”
“OK good, is Gary there?”
“Yes he’ll be waiting for you on the ward.”
“Thanks for your help, bye, have a good day.
“You’re very cheery for someone who is recovering from surgery!”
“Am I, hmmm maybeI am!”
”

I just laid back and tried to relax and the porters took me to the ward.

“Sorry, she can’t be on this ward, we’re full.”
“Oh, they told us to bring her here.”
“Well i’m sorry, I don’t know why they would, they know we are full.”
Sorry about this Sassy.”
*Oh but I need a wee*
Hey, I have a bed, i’m fine.”

Back to the recovery suite…

“We have to wait here until they have a space for her on another ward.”
“Oh right, let me ring around and find out what’s happening.”
“How long am I staying here for? Can I have some more painkillers?”
“I’m not sure Sassy it shouldn’t be too long. And we can’t give you any more i’m afraid.”
*It’ll be good to finally be on a ward so I can go for a wee*

Small talk between Gary and I and the nurse introducing herself to me…

“On a scale of 1-10 how much pain are you in?”
“9, 91/2.”
“That’s pretty high…”
“Yes it’s been getting worse as time passes.” “Can I have some morphine please.”
“You’ll have to wait a while, we don’t have your notes yet.”
“Oh god I really need painkillers! I need to stretch my leg”
“I’m sorry there isn’t anything I can do until your notes arrive.”
“Oh my god! It’s like 3 blood pressure cuffs on my leg at once! This is agony!!”
“I need to stand up.”
“No you can’t stand up.”
“NO I NEED to stand up!.”
“No sorry I can’t let you do that i’m sorry, you’ve just had major surgery and I need to look after you.”
“Well let me stand up, it’s the only thing that helps, i’ve been having this pain at home but it’s intensified!”
“You’re not allowed to stand up and i’m not going to let you.”
*OK I officially dislike this woman, get her out my face*
“Can you go see if i’m allowed morphine yet?”
“Yes, I can go do that “

“Right she’s gone, help me get out of this bed.”
Long pause…

“Sassy you heard what she said.”
“Get me out of this bed now!!
*Gary doesn’t move but I do*
“I need to stand up, just for a minute. It’ll help release the pain, I know it will.”
“I’ve been explaining this pain to you over the last few days, and it’s completely intensified,why aren’t you listening to me?”
“I don’t want you to get hurt, or damage your leg.”
“I’m not going to get hurt, I just need to sit in the chair and pull myself up, and I won’t be putting weight on my leg.”
*Gary helps me get into the chair.
As I stand up, i’m in absolute agony, and have to breathe hard to not cry out.
Although it’s agony, it’s doing what I thought it would, and pushes the blood around my leg. The pain although intense starts to steady itself.
Once i’ve done all I can to release the pressure I move back onto the bed*
“I’ve got some morphine for you.”
“Thanks, can I go to the toilet please?
“You’re not allowed to weight-bare, but i’ll get you a bedpan.”
“What if you push me in a wheelchair?”
“”No, i’m not allowed to do that.”
“OK, i’ll have a bedpan then.”
At least 5 minutes pass…”I really need a wee, where is she?”
“I don’t know…”
“Can you check?”
“She’s with someone else at the moment.”
“Oh great, I hope I don’t wee myself!”
“OK, I have the bed pan, if you could just roll onto your side.”

I had already lifted my backside up and started pulling at y gown.“Just lie down for me.”
“Oh, this is how i was doing it in the other hospital it’s easier for me.”

Fumbling with gown and getting frustrated

“Gary take this stupid gown off me.”
“Let me lower the bed for you.”
“No I don’t need it lowered?”

Gary undoing gown.

“Here, let me help you.”
“Please can you just leave us to it, I want this gown off and don’t feel comfortable getting naked in front of you.”
“It’s OK i’m here to help you.”
“Well I don’t want your help, can you leave please?””
She reluctantly exits the cubicle but constantly sticks her head in.
“Can you just leave me to it, you’re distracting me and I can’t concentrate”
“I need to make sure you’re OK.”
“My partner is with me, i’m OK.”

She comes in anyway…
“So you still haven’t been? You’ve been sat there over 10 minutes…”
“Can you just get out please?
“I just want to help you.”
“Just get out!!”
“There’s no need to be so rude!”
“Well you asked if you could come in and I said no! I need to do this in my own time stop hovering over me.”

Finally she leaves…

Still nothing…

Nope, nothing.
I try everything pushing, prodding, wiggling, and even getting Gary to rub my back with no avail.

Finally an hour later…

The tiniest trickle happens!!
“What?! I’ve been waiting all that time for that??”
But the relief is insurmountable.
*****

Lots of love, medication and a sandwich later, i’m finally relaxing as best I can.

The nurses do a change over, and it’s time for Gary to leave.
We say our goodnights and he helps me settle for the evening. I apologise for the outbursts and severe grumpiness, he accepts my apology and says he can tell how much pain i am in.

I didn’t get much sleep that night, mostly to do with the pain, but mores because my bladder decided to kick in and I couldn’t stop peeing like a racehorse until breakfast the next morning!

Please stay tuned for the final instalment of my accident and the chaos that ensues… 😉

Gary and I headed off to A&E on Friday morning as previously discussed by the Doctors and ourselves in Malta.
We are extremely grateful to our friends for picking us up from the airport, and then kindly carrying me to the sofa! As I had been in a foreign hospital I had no wheelchair or crutches to aid me; only the people around me!

Thankfully A&e wasn’t too packed, so we didn’t have to wait too long to be seen. I was given a set of crutches and an appointment to the fracture clinic for Monday morning to discuss surgery.

And we were sent on our merry way.

*****
Around 5 AM Sunday morning I woke up in considerable pain, my leg felt like it was having the life squeezed out of it, I took some painkillers and by 06:30 things hadn’t improved, I was starting to seriously worry; I had no DVT injection since Thursday and I was beginning to worry there might be something sinister going on.

(Fondaparinux injection is used to prevent deep vein thrombosis (DVT; a blood clot, usually in the leg. It is given to those who have had a recent leg operation or have severely restricted movement in the legs from an accident.)
Gary and I went straight to A&E; I wasn’t seen by a doctor until 10:00.

I explained everything from my accident, handing over my discharge letter along with x-ray and CT scan, to the fracture clinic appointment, to the pain I was feeling, the Doctor did all the checks and said that I did have circulation flowing and there wasn’t anything to be concerned about. It wasn’t until I stressed that this pain had become increasingly worse daily that he decided to keep me monitored until I could speak to an orthopaedic doctor.
Gary and I made it clear that I was blind, but I don’t think this was passed onto the HCA taking my OBs; he just stood their silently waiting for me to hold my arm out and then finger so he could take my blood pressure and pulse…
Regardless of my sight loss I thought it was almost rude that he came into the cubicle without a word, moved about quietly and then expected to take my OBs in silence and stalk off again… There has been a change in the law that people with extra needs who attend NHS centres should be given notes/ leaflets/ medical information in a format preferred by the patient. So for me that would be; verbal communication as to who they are, what they are doing in the room, talking openly about my care, and any medical information to be given to me via email.
This was never discussed with me, but as it wasn’t exactly high on my priority list I decided not to mention it.

When my 4 hours in A&E were up; a nurse explained that I had filled my quota of A&E hours and I had to go elsewhere for monitoring and waiting to see the Doctor in charge of Orthopaedics.
Discussing with the nurse as she moved us elsewhere in the hospital it’s clear that the medical professionals are aggravated by the government putting this in place.
If I were to stay longer than my quota she would get it in the neck from her bosses!
How ridiculous is it that the government are more bothered about number crunching than patients and their welfare!

My family and I were put on a ward and told that they couldn’t give us a time, but the Doctor would be with us when he could.
We laughed and joked, and waited around for at least an hour and half before we began getting impatient. My Dad and Gary were giving us hangry eyes; so Mother and i sent them off to make us some breakfast sandwiches 🙂
Thankfully for us Gary and I live around the corner from the hospital so it was easy enough for Gary and Dad to pop home, make brunch and bring it back.
Sausage and bacon sandwiches with a cup of tea was just what we all needed! Thinking back now, it was very tasty and I was extremely grateful to the boys, even if it was more for their benefit than either mine or my Mum’s 😉

We waited for at least another hour before my Mother decided to go and investigate as to what was going on, she came across a bunch of nurses just sitting on their phones not doing any work!
Upon enquiring she was given an “we don’t know what’s going on”comment.
Mother didn’t take no for an answer and eventually we were told that the Doctor we were waiting on was in surgery and would see us when he was out…
Although annoying that we hadn’t been given this information before, at least we finally knew what all the waiting around was for!

Eventually we saw the Doctor. From the x-rays he had seen the fracture was severe and definitely needed surgery, but as the hospital couldn’t access the CT scans that i had brought over with me from Malta, he couldn’t make an informed decision of how to repair the leg properly.

CT scan give for more detailed information than an x-ray. I was told that I could possibly have the surgery as early as the next morning, so I was to prepare myself by eating and drinking nothing after midnight and I would get a phone call in the morning to let me know if I would be having surgery.
It was a long day; we didn’t leave the hospital until around 14:30 but at least we had cut out the middle man of going through this all the following day at the fracture clinic.:)
** * * *
I hope you haven’t had to attend A&e, but if you have, what were your experiences with it?

I guess i should have known that things weren’t going to run so smoothly on our holiday to Malta; finding out just 4 days before the holiday that Low Cost Holidays had stolen £700 from us, “cleverly set the business up in Spain knowing their customers wouldn’t be ATOL protected and wouldn’t get their money back, if, they went into Administration. The robbing bastards!

I’ve never been too good in the luck department and when one thing goes wrong; it’s essentially the domino effect from there on out…

Gary always tells me to stop running off all the time. and for once he didn’t tell me to wait, and for once I really shouldn’t have thought cliff diving onto concrete would be a wonderful idea! 😉

Of course i’m only joking; I didn’t purposefully injure myself but it happened and what ensued was mini chaos.
If you’re not sure what i’m on about read my earlier post the Holiday I’ll never Forget.

After the horrific journey of my leg being thrown round in all directions at hitting every pot hole Malta has to offer we eventually arrived at Mater Dei Hospital.

It’s amazing how you remember everything is connected in your body when you sustain an injury, every bed transfer, the slight movement of the trolley or just being asked to wiggle my toes was almost unbearable.

I don’t remember how much morphine was given to me, but apparently it was a lot ore than they initially thought I would need, Yet it never touched the surface. The proof was in the pudding when the people applying plaster of paris to my injured leg yanked and tugged at my leg. They were ruthless and even when my leg went into violent spasms and I told them to stop they wouldn’t!!

I’m not trying to be a doctor but seriously, if a patients’ leg is shaping to the point where you can’t hold it straight while wrapping it, and you are wondering why i’m yelping, and why the cast seems slightly off?
Maybe, just maybe you should have listened to your patient!

Sadly Gary was not around to be my knight in shinning armour and save me from the torturous beasts as he had to leave the hospital and travel on a 80 minute round trip to retrieve our passports and eHic1 card, otherwise we would have to pay 100€ just to be seen in A&E!

I was given an X-ray and an MRI; the results showed I had a level 5 fracture, considering there are 6 levels to a fracture this was not good!The results showed that I had broken the top of my Tibia, Fibula and my Patella was shattered. Not only had the bone gone into shards but they were also sitting on top of one another.

I was eventually moved upstairs on to a ward, the staff were brilliant, although the first night wasn’t particularly pleasant… We arrived on the ward an hour after dinner was served and even though the staff knew i’d be staying until my flight home on the Thursday, they only offered Gary and I a jug of water, until I asked if we could have a cup of tea.

For me it wasn’t so bad as I had been concentrating on my leg all day, but for Gary it was hard, we hadn’t eaten anything since breakfast earlier that morning.
Gary managed to find somewhere to buy us both a sandwich thankfully.

I had not long finished my sandwich when I asked the nurses for stronger painkillers as I just couldn’t handle it any longer.
The lovely nurse prewarned me that I may feel a little nauseous and the painkiller will probably make me fall asleep pretty quickly.
I got settled and said to Gary, i’m all woozy i think i’ll fall asleep any minute.
I was revelling in the wooziness when suddenly without any forwewarning from my body I threw up all over myself!
We had nothing around except an empty mug and so I managed to catch the remainder in it…
When Gary finally got hold of a nurse she came over and one of the first things she said to me was
“No, don’t drink anything if you’ve just been sick.”
When Gary replied:
“She was sick in the cup too.”
The nurse didn’t seem best pleased.
With the help of Gary, the nurse managed to clean me up

I didn’t get any sleep that night, the combination of pain and animal noises coming from another patient all night saw to that.
I kid you not when I say he sounded like a cross between Mufassa from the Lion King and a hippo. It was unnaturally loud and disturbing!

The Next Day.

The next day I was seen by a surgeon, who explained that I needed an operation as there was no way my leg was going to heal itself.
We discussed that as my flight was the next afternoon that I would be fit to fly and I could have the operation back in the UK which I was really pleased about!!

I was given a bed bath by two very lovely nurses, if you have never had a bed bath all I will say is leave your dignity at the door. They were extremely professional and careful, but I really wasn’t expecting the moment the nurse actually shoved a flannel up my vagina and gave it a good wipe!

I encountered my first time with a bed pan. They are slightly bumshaped and inside sits a plastic bowl cut to match. Using a bed pan allows urine to run everywhere, trying to lift my bum, hold my weight and stop the urine trickling down into a mini pool on the bed as I got off was much harder than I anticipated!

I also had to tackle using the toilet; when your cast goes from your ankle all the way up to the middle of your thigh and straight out is pretty strange not only pulling trousers etc down, but extremely uncomfortable to sit awkwardly as your leg sticks straight out.

I get this weird tension/ pressure in my leg… and don’t even think about pushing, it feels as if your leg is about to drop off!

Minus the pain, the stay at the hospital was good, the nurses were fantastic, even allowing Gary to sleep by my bedside each night and putting extra portions of food on my plate so we could share dinner.
They were great at supporting me by helping me go to the toilet, get dressed and generally had a calming and cheery disposition.

The Journey Home.

The journey home would have been smooth, almost pleasant if the Maltese Ambulance service hadn’t of taken the piss to arrive. We booked the ambulance for 14:00 as the gates closed at 15:15 and according to the nurses it would only take 15 minutes to get there.

The paramedics didn’t turn up until 14:40 and thought it appropriate to laugh joke and go as slow as a sloth on sleeping tablets! We were losing time fast….No attempt at getting me transferred from the bed to the trolley, and again from the ambulance to the wheelchair, twice!
The drive itself was uncomfortable to say the least with it’s bumpy roads but thankfully my leg was now a lot sturdier in a cast.

Gary along with the nurse had to check us in, and when they did that (the receptionist was more bothered about what happened than actually scanning us in, we almost missed the closing gate!!

It was random being on a wheelchair with no arms and narrow frame getting on the plane, then getting hoisted onto the seats by a bed sheet!
I had always wondered how permanent wheelchair users would be able to get on the plane and get to their seat.

The flight back was more comfortable than I expected, I had an entire row to myself, and it was only the armrest digging into my back that made the journey uncomfortable.

Gary had to sit on the end aisle seat and hold my legs as the airport runway is small, so i became increasingly worried that my leg was going to go flying and I would be in agony.
I was happily surprised, the landing was very smooth and my leg didn’t jolt at all.

A big thanks to Ryanair for being so accommodating with flight adaptations! Thank you also to Luton airport for your smooth running specialist assistance and transfer! 🙂

And that was my hospital stay in Malta, stay tuned for the 2nd instalment coming soon!!

* * * *
Have you ever had an injury abroad? How was your medical treatment and attention? And the journey home?

Welcome back ladies and gentlemen to the newest instalment of my disability Q&A campaign series 🙂

Today’s interview is brought to you by a wonderfully strong and courageous woman called Debra, we met online and I can honestly say that not only is she such a lovely person, But her blog is filled with enthusiasm and knowledge!
Without me continuing to ramble on, I shall let Debra share her story with you…

Tell me about yourself:
My name is Debra Barrows and I am 34. I live in Coventry New York with my husband, stepson, rainbow baby and fur baby.

My Jobs include being a Household Manager, Ordained Minister, Party Planner and Blogger.

Have you had your Visual impairment / disability from birth?
I was diagnosed in 2008.

Do you refer to yourself as a person with a disability? If not, why not?
In general, I do not. I try to overcome my issues on a daily basis. When others know that you are disabled they seem to over help. I find this annoying.

Do you tell others about your disability? Or do you prefer to keep that to yourself until you are comfortable with the person knowing?
I hold off telling until I have too. I have found that people who see me on a good day think that I am just trying to get sympathy. Meanwhile I hate being seen as disabled because I hate the look of pity from others.

Do you use any mobility AIDS such as a wheelchair or walking stick?
I have an Insulin pump, molded wrist splints for both hands, a walking brace for my left leg, and a leopard print cane.

If you could extinguish your disability, would you? – If not, please explain why.
Yes, YES, and YEEESSSS! Before the Heavy Metal Poisoning, I was very active. I worked on farms; I was a nurse (my dream job). I did not have constant pain; I could take a Tylenol for pain and go on with the day. Now I have multiple pain medications that do not touch the pain somedays and then be couch bound for days sometimes. I could eat anything now too much milk affects my blood sugar levels. I have to be careful what I do constantly because if I sit too hard I can break a bone. Yes I wish for my disabilities to be no more constantly!

How has your disability affected you?

Socially I do not go to crowded places to avoid being bumped into. The simplest of touches can send me into a spiral of pain. Sometimes the simplest of touches can also send me off balance and I have to struggle to get back to my feet.

Physically I am weakened. My bones can easily break from the slightest of pressure. My muscles have deteriorated in my legs. The constant varying levels of pain throughout my body makes the simplest of daily routine difficult.

Mentally I am not as sure of myself and who I am. I used to have a life path I was following it to a T. Now I constantly redefine what I can do daily. This wears on me. I get into slumps where I think I am no good for myself or my family. I have to recenter myself spiritually as to not have a depressive episode.

Do you think your disability has made you who you are today?
Yes. If I had not become disabled, I would never understand what others are dealing with. I have a real understanding for what pain is and how it can destroy lives. That is not something I could have ever understood from all my nursing books.

Is there a particular question you are asked often because of your disability? If so, please explain below.

Why do you have a handicap sticker, you look fine to me? Because there are days when I do not have to wear my braces or use my cane people assume I am fine and am trying to use the system. To be 100% honest I hate my handicap sticker!
However, there are days I would never make it into a store if I had to walk farther than the handicap parking space to get to the wheelchair inside.

What are the positives of having a disability? I understand others better.

What are the negatives of having a disability? Dealing with it all is very frustrating since I know what I used to be able to do.

What would you say is a difficulty for you being disabled?
Myself. I struggle to accept this is my life. Going from a strong healthy active 27 year old to waking up unable to move is hard to adjust to. I fought hard for the last 8 years to get to where I am. Actually, 6 years for the 2 years before my husband coming back into my life I just accepted what the doctors had to say and was ok with being wheelchair bound for the rest of my life. I had given up. My husband helped renew my faith in God and myself. Without him I would probably still be in that wheelchair.
As a person with a disability, what are the things you face on a daily / weekly basis that frustrate you?

In my home, I deal with struggles with simple things like washing my hair, so I cut it from waist length to shoulder length. I have handles in my shower. I have an electric jar opener. I have rugs so I do no slip. My furniture is arranged so there is always something to hang onto if I feel myself falling. These things help with the frustrations when I can’t do things for myself.

Outside my home, the things that frustrate me are people who think they know me and judge me. Stairs are horrible. Uneven ground and grass that is too tall trip me. Extreme changes in the weather affect my joints. I hate walking from my car on a hot day into an air-conditioned building. My joints stiffen and my fibromyalgia ticks in. I am the woman wearing a coat in 80-degree weather. People who bump into other people.

Are there any tips or tricks you use in daily life you’d like to pass on to another VI/ disabled person?
I find that organizing everything to a specific place helps. There are days I am stuck in bed. I know where to tell people to get my medications from, where the bill I need to call on is, what binder has the kids information, what closet on which shelf has the kids’ stuff for their appointment.

Do you use Assistive technology in your daily living?
I do not. Technology fails. I also live in a dead tower zone. I use a wall calendar and pocket calendar for everything. I put all appointments on both so I always have a calendar near me. Routine is my friend.

What piece of advice would you give to someone newly diagnosed? Or going through a deterioration in vision / or mobility?
Find supportive people. No medication, no assistive aide or gadget is going to help you through the mental workout you are going to endure. People who truly love you will be there to help you, love you and push you.

Any advice you’d like to give to a person with no disabilities?
Do not assume you understand. You have never felt what the person with their disability had felt. Every person is different, everybody reacts differently. Do Not assume to understand!

Did you seek out any specialist services / charities to help you and your family deal with your situation?
No.

Thank you Debra for sharing your story! I’m in all of you, the courage and resilience you have is amazing! You prove that no matter what happens we always have fight left in us!
I hope that people reading this truly understands the meaning of an invisible disability, just because someone isn’t using an aid or crying out in pain, does not mean that they are not suffering and having a hard day with their disability.

You can find out so much more about Debra, her family and how she hopes to support others by visiting her fabulous blog!

Please don’t forget to follow her links, and why not share the love? Leave her a comment, we would both appreciate it!

If you, or anyone you know, would like to take part in my Campaign, do not hesitate to contact me on the following:
Email:SassysWorld6@gmail.comTwitterFacebook

When RNIB contacted me about their new campaign #HowISee I was enthusiastic to get on board 🙂

Did you know that 93% of people who are registered blind or severely sight impaired actually have some residual vision?

It’s a common misconception that people using a white cane or a guide dog use them because they have no useful vision left.
So that means only 7% of the population of people using these aids have light perception or black blindness! A very small figure in comparison to the 2 million people in the UK suffering with sight loss.

Visual impairment is a spectrum, which varies from eye condition to eye condition and from person to person suffering with the same condition as another.

The conditions above are links, please feel free to click on them and find out more about these eye conditions. This has been sourced from the RNIB website
For example, medically 5 people with RP may have similar symptoms due to their condition: loss of peripheral vision(commonly referred to as tunnel vision), light sensitivity, night blindness and even colour blindness.
Each persons vision can vary dramatically from month-to-month and year to year, unfortunately this is a deteriorative I condition.
If five people with retinitis pigmentosa were to stand in the same room and you were to ask them about their visual acuity, you could get extreme and varying responses from them: light perception all the way through to clear and detailed vision until it stops peripherally. This on its own can vary from 10% peripheral blocking to 90%. If you imagine yourself looking than the lens of a telescope, you can only see what is directly in front of you, and in most cases of retinitis pigmentosa this is what is affected first.

Please watch this video of visually impaired people sharing their story and explain how they see! 🙂

My Story.

This went on into Uveitis Iritis at the age of 14 and has been a deteriorative eye condition ever since.

I shall explain my different types of sight in a few stages.

*Born sighted with no vision problems whatsoever; I had 20/20 vision,.
I could see for miles of a beautiful scenery.
Read the small print on documents without any struggle,
I could spot a friend in a very busy crowd
See an ant on the ground even when I was standing up.

*I needed to sit closer to the whiteboard in school and needed contrasting pens like black to help it stand out, green and red were big issues.
Things started to get blurred the further away I was.
Things weren’t as sharp in the dark as I could see them in the day.I started to sit much closer to the TV. I even started using a magnifying glass from a christmas cracker to read texts.
I could no longer see the stars in the sky.
My colour vision started to become muddled; pinks and yellows, greens and blues, browns and purples.
My eyes were very sensitive to light balance; going from light to
dark,, or dark to light took my eyes a good few seconds to readjust.
My sight would plummet and all I could see was light anywhere between 15and 45 seconds.
I needed to use a magnifying glass to read anything unless the font was abnormally large.
I needed to sit closer to the TV as detail was very blurred.

*I couldn’t see past the end of my nose.
Each day/ week I could see less and less in front of me.
I struggled to use my phone even with magnification.
Everything was hazy and I could only see big block colours otherwise I couldn’t distinguish anything; from people to steps.
*Now.
I Have light perception; I can see when a light is on in a room, whether it’s day or night, ands light bouncing off things such as a mirror.
If you were to close your eyes now you would be able to see light flooding into your room and even pinpoint where there is a window, but you’ll be able to see nothing else.
Even if you know you are lying on your bed in the morning, you know there are things in your bedroom yet your eyelids block anything except light reaching your eyes.
That is essentially what I can see! 🙂

Up until I lost my remaining vision I refused to use a cane, so the public were oblivious to the fact I had any sight problems.
I cared more about how I looked and what people would think of me and less about my safety, which yes I know is completely ridiculous!
But now i’m loud and proud about my cane; it gives others a visual clue that I have limited vision, and helps keeps me safe also.

If you want to get involved in this brilliant campaign; write a blog, poem, story, create a podcast or even a Vlog feel free to join in and link it to RNIB and myself I would love to know your story 🙂

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